Why me???

[Janellie8]

Hi everyone! Does anyone else know when they are going to have a seizure? Because I get weird feelings before it happens. And when I get the weird feelings I usually isolate myself because I don't want anyone to see me have a seizure. This makes me so sad I don't know if I should just embrace my epilepsy and do what I want to do and ignore the feelings. Or if I should continue hiding when I get these feelings. Ugh! I hate my life.

 

[Fedup]

Janellie8

Everybody is different when it comes to this and yes maybe some get a feeling, I know I have got that weird feeling that I just was not right before a seizure but only once or twice. Do what you want to do and do not let this run your life, yes you have to take precaution and there are some thing better left alone by you, we all hate our life with epilepsy. I have had this since I was a child like a lot of others, but at times I still would love to see what its like without epilepsy. The truth though, I would not change my life even with the epilepsy for anything. I actually think I would miss it in a funny way, hope you can figure that one out I cannot. As for hiding, why you are just like anybody else, if you do not want them to see you have a seizure fair enough and carry on. But remember you are as good as any body else if not better.

 

[Janellie8]

We are all human.

Fedup,
I guess we both have different views about our epilepsy- I have had it since I was 6 and I don't think I would miss it much. But it shows how comfortable you are with the subject and how much it has been apart of your life. You know what, I am just as good as everyone else and maybe even better as you say! This statement made me feel so powerful and even on top of the world. Thanks so much for understanding I just want to let you know that you made my day!

Thanks again,
Janellie Pruneda

 

[cadsgj]

Janellie8, I understand your feelings. Me I am one who subconsciously (not mentally my choice) tries to slip away when my seizures get ready to hit. I get what many here at CWE have referred to as an aura... fifteen or so seconds before my seizures hit - get complex partial or simple partial seizures 90+% of the time. It is not my mind at work caring one way or another, it is the seizure taking control and it does not want to be around anyone. I suppose if I had the choice though, i think I would still prefer to be alone. May well be subconscious in my mind though as from my early years (15-20 years back) there on occasion would be friends (?) thinking it was kinda funny. But, you have to sit back and see just how you feel about it all and go forward in the best way for yourself.

I really hope you can sit back and truly feel and understand the best for yourself. In my mind seizures either way are not a thrill so I personally have no desire to change just how my subconscious has taken control of it all for me. I do wish the best for you to make it all in the way which makes you feel the best. Thumbs up and fingers crossed!

 

[Janellie8]

Thank you so much for understanding. I guess that when I think about my epilepsy I see it as a terrible disease, but it's a part of me and I have to recognize that- I haven't yet, but I'm working on that. I appriciate your response, it makes me feel comfort that I'm not the only one having a hard time here (well I think it's a hassle). Good luck to you as well!

Hugs,
Janellie

 

[Belinda5000]

Janellie8,
I hardly ever have auras anymore, and sometime I just get a sensation in my head or maybe a headache before my seizure.Most of the time I usually have no warning at all.
I still have people that have to call 911 if they see me have a big seizure, so I'm bleeding.
I had some paramedics that I found out need to go back to school, they seem to think I was angry just for the heck of it and I was in the posti ictal part of the seizure.

Belinda

 

[Zolt]

Hi Janellie,

Yes i do have aura and praise the lord I do. My seizures start in the sensory strip area, which cause me to have weird sensory feelings, like feeling numbness in my fingers, whereby i drop things. Then sharp pins and needle feeling in my hand. When that happens, i know that the seizure is happening. Then the electrical activity travels to my motor strip in the brain, causing a heart thumping feeling as well as movements in my whole arm.

Since i know when a seizure is starting, i can take my emergency pill, Ativan to help stop the seizures. Although after taking Ativan, i am dust for the rest of the day. 90% of the time the seizure will stop at my shoulder, but it's the 10% that i'm worried about. So far with the new med I'm on, Gabapentin and with the Ativan, i've not had one of the 10% ones. Also with this new med, i've been able to schedule my seizures for early mornings. Which is another blessing, since that way i'm in the safety of my home and away from curious onlookers.

Zolt

 

[QueenieKP]

I have a feeling of IMPENDING DOOM hard to put into words but that feeling when you get a knock at the door late a night and it's a police officer.

Then I try and run away and a hide in the accessible toilet at work which is a handy hint to colleagues that I am going to have a seizure.

Q

 

[mejohn1]

Hi Janellie. I've almost always had an aura before having a seizure. Mine make me all weirded out, it's almost like I'm watching or hearing myself in 3rd person. Deja vu is also another sense I've had forever and quite often precedes a seizure. Aura's are seizures by themselves, but frequently lead to larger ones. My seizures have always had an aura, though my aura's haven't always been followed by a seizure. It's just so dang weird! Another strange thing is that I rarely remember the 10 minutes or so around the seizure, all I want to do is sleep afterwards and can sleep for hours. I didn't have an aura before my only tonic clonic earlier this year, I just woke up on the floor feeling like I'd been hit by a train (and looked like it too when I looked in the mirror!) E is a part of who we are and it attacks us all differently, but in many ways the same too. Hang in there, yes it sucks, yes it's frustrating to not get answers, yes it's embarrassing....but, it could be much much worse.

 

[Janellie8]

mejohn1, I
I didn't know there was a word for the sensations before a seizure! I also feel as if I am in 3rd person viewing myself! I also feel like I have extra sensations, for example when I touch my cat during this I could feel each hair on her back- so strange! All of my seizures have auras. I feel the pins and needles mostly between my knees and thighs. And my auras also don't always come with a seizure as well. I always tell myself, "quit complaining because it can be way much worse than it already is." I just don think that anyone should deal with this!!! thanks so much for your response! It made me feel as if I'm not the only one in the world who has epilepsy. Most of the time I do feel alone :/ thanks again!!!!

Hugs,
Janellie


QueenieKP,
You made me smile!!! I need to get a hiding spot too! Thanks so much for your response, it made me feel better!

Hugs,
Janellie

Zolt,
Yeah I guess I never thought of thanking my auras! I also have pins and needles sensations between my knees and thighs. It's amazing how you are able to schedule your seizures! Mine usually are around night time, but I'm in College and share a room with a roommate, I kinda feel like I freak her out sometimes when I have a seizure. Good luck to you! Seems like you have a lot under control (which I definatly need). Thanks so much for understanding!

Hugs,
Janellie


Belinda5000,
I feel you!! Thank you for understanding lovely take care and good luck to you!

Hugs,
Janellie.

 

[marty]

Hello
I too hate epilepsy it has buggerd my business and i can`t do alot of thing that i love to do , however for me i realised i was letting epilepsy rule my life with the fear of another siezure ect , in the end i thought " bugger it & get on with life " it still upsets me that i have it but on the other hand i am lucky as things could be worse ( i can now drive my car ), i dont hide the fact that i now have epilepsy and if someone doesn't like me because i have it " thats great " it shows the true nature of that person and that they arn`t worth knowing anyway , with myself i have found people to be brilliant , all the best .

 

[marika853]

I, too have auras and or feelings of deja vu. Sometimes they come with seizures, others I can talk myself thru. Luckily, I have always been able to stop what I was doing and sit down. I experienced several while I was working in the school system. One teacher that I worked with was very calm and controlled, another was freaking out and wanting to call 911. My neighbor just came to get me and took me home and I took a nap. Now the nocturnal ones are completely different, for me. I wake up not knowing what is going on. Never have hurt myself, thankfully. Thought that I had been dreaming when told what I had been doing. But haven't had one of these since 2008.
We ALL just have to do what we have to do. If someone doesn't accept us for who we are then, "too bad!"

 

[Janellie8]

marty,

I can relate to you, I am letting epilepsy rule my life. I do fear of another seizure and then I end up having one because I worried about it! The sad thing is I do hide it I feel like I would be treated differently and people would just judge me hardcore. It's awesome you get to drive! I get too worried about having a seizure when I drive so I don't drive at all. Thanks

Hugs,
Janellie <3



marika853,

Yeah same here- when I feel the auras coming I take a seat too just to not get hurt. I also have nocturnal seizures. I would rather have them in my sleep than in the day when I am active and doing things. But yeah, if people don't accept us, they are missing out on amazing people like you Your last statement made my day! Thanks so much!

Hugs,
Janellie <3

 

[marty]

For myself stress was meant to be one of the triggers , and bugger me was I stressed ! it has taken myself over 2 years to stop stressing and so far ( touch wood ) no seizures , I was getting around 7 seizures a day for several months , you must not stress it isn't worth it , stress = seizure = more stress = more seizures and it just keeps on going , never feel that you are less of a person because you have epilepsy than someone that doesn't ( hey in a few days / months / years they may have epilepsy , I got E at around 40 and they could too ) , what was very important to me was talking to people and walking my dog , when you sit around home all day ect all you do is think , never ever hide the fact that you have epilepsy " AND NEVER FEEL ASHAMED THAT YOU DO HAVE IT " you can and will have a great life if you do it the right way " THINK BUGGER EPILEPSY AND GET ON WITH LIFE " All the best .

 

[Dolores]

Why not me?

I stumbled across this video and was simply amazed by Mattie Stepanik. With all he has had to endure he says he wonders sometimes "Why me?" and then realizes the answer is "Why not me?".

It is humbling to listen to the wisdom he shares as he knows exactly what is happening to him, as he realizes there are no guarantees, as he "walks his path".

This brief segment from his interview with Larry King left me awe struck. Mattie's segment starts at the 1 minute 35 second mark.


Here is a link to the Larry King interview (the clip above starts at the 6.17 minute mark).

[ame="http://vimeo.com/64043251"]Mattie on Larry King- part 1[/ame]

People like Mattie give me great hope.

 

[Janellie8]

Dolores,

This is so powerful! He is such an inspiration, I'm glad I got to see this. Thank you!!

Hugs,
Janellie

 

[C0urt]

Why not you, you have made it this made it this far. And you will it only make it further. That takes a certain kind of person. Not everyone can do it. But apparently, you can.

I have given this speech a few times around the forum, but apparently I waited to long and someone beat me to it,but I I hope you understand. It is true. these are true words. And meant for special people twitchy as they may be

 

[qtowngirl]

(((HUGS))) janellie.
it is such a common misunderstanding... 'that feeling before a seizure.' as mejohn said, these feelings are a seizure, sometimes they go further, sometimes not, and are referred to as 'simple partial seizures.' out of all seizures (over 40 types) simples seem to have the largest amount of 'different feelings'... with the four main categories being Autonomic, Sensory, Motor, and Psychic, which all have many types of symptoms.
'aura' and 'simple partial seizure' are both used depending on the person/doc making the reference, but they mean the same thing. many times the reference is aura when it turns into a larger seizure, but it itself, whether it turns larger or not, is a simple partial.
i've had well over 1000 s.p.'s, and they only turned into grand mals 13 times (aside from the 3 during pre-surgery study going off meds).
definately something i recommend researching, not only for your health/epilepsy but also to feel like you know yourself and can retain some sort of control. some types of seizures don't have triggers, but simple partials have many. best of luck and keep us posted